Wednesday, September 16, 2009

book reviews

I have just joined a book review group, so I will read and review books here too!

Wednesday, June 11, 2008

Posts about a loving heart

The previous posts are all e-mail updates that we sent out to family and friends during the time of Aliyah's heart problems. If they can help anyone going through similar difficulties I am happy to share them. God bless!


Aliyah is home .... She and I were sitting around the hospital room mid afternoon Thursday and they came in and said they wanted to send her home. The heart racing incidents had subsided and her second biopsy to check for rejection of the heart was again negative, excellent. After the false start on Tuesday I refused to pack for awhile, but eventually I got packed up to go. I should have waited awhile...since, of course, we could not leave without a little drama. The Central IV line they had put in her neck bled alot when they removed it. Quite a mess actually. The nurses got a little wet, but Aliyah kept quite calm, as usual, and they got that bandaged up and she was able to come home soon after.

Can Aliyah have visitors? Yes, however, she is very immuno-suppressed and should not be around people who are sick. They are also discouraging her from being around large groups of people for awhile. In public she will need to wear a mask for now, but she can get out when she wants to. Physically she is a little weak and will be for a few months, but Aliyah was able to take a 15 minute walk yesterday and is making progress each day. She is on strict dietary guidelines, low sugar especially (concentrated sweets), but also low fat, low cholesterol, low sodium. That will be hard for her, but she is adjusting pretty well already.

Aliyah will always have a few doctors appointment & tests and medications to take, but she should be living a mostly quite normal life in a few months. By Fall semester she should be back at Purdue full-time in Computer Graphics Technology and will probably still be able to complete a couple of her current semesters classes over the summer. The others she can retake in the Fall or whenever. Her mother and I are very happy for her.

Thanks again so much for all your thoughts, prayers, and help through this very difficult 2 years.


Aliyah is doing well. She is going for longer walks in the hospital every day. Yes, she is still here at St. Vincent's.

Aliyah was almost out the door Tuesday afternoon, but the new heart decided to race a few times and they decided they should watch her a couple or a few more days. Her magnesium was low and could cause things like that, but it could be other things too. So... we will wait a little longer to go home. She had her second biopsy done this afternoon and we should get results in the morning. Perhaps Aliyah will even get to go home tomorrow, but it could be next week. They want to figure out why her heart is racing sometimes before sending her home. They even said it could be an electrical connection to the new heart that they might have to go back in an cauterize. We hope and pray that is not the problem. The bottom line is that it is not a matter of if the new heart will face some rejection issues, but but when, and they will be adjusting her medications over the coming years to make sure things are working well for a long time.

Anyway, Aliyah also got to take her first shower in about 2 years today, so good things are still definitely happening.


Aliyah is still doing quite well. She eats Lasagna and other normal foods now. She walks up and down the hall a couple of times a day. Significantly, Aliyah also had her first biopsy Thursday to check for any signs of the heart being rejected and it was happily negative. They will already be able to ease back on some of her medications because of that. She has a couple of minor things to take care of and then should get to come home on Tuesday. She will then be making regular trips to Indy once or twice a week and doing cardiac rehab in Lafayette 3 days a week also.

She is in room ... in CVPV of the main St. Vincent's hospital building on 86th street, like the other times. She can have visitors. Anyone who is not sick is welcome. She cannot have flowers or uncooked fruits and vegetables. There is a sink just outside the door to wash your hands thoroughly before entering the room. Visitors are not supposed to get up in her face, so while she likes hugs, they are not currently recomended.

The phone number for her room is .... Please do feel free to call. Aliyah is normally awake until 11pm and normally wakes up by mid morning.


Aliyah is doing great. All the chest tubes are out. Most of her IV drips are off. She is still in CVTR (cardiac recovery). Visitation is limited, but people have stopped by to say hi through the door or spend some time with Dana or I. She should move to the CVPV unit on Wednesday or Thursday where the visitation is much more liberal.

Her immune system is being knocked down severely to counteract the body's natural tendancy to reject the new heart, but the modern rejection medicines and the prior to surgery crossmatch prevent most of those problems. However, even minorly sick people should obviously not visit her right now.

Aliyah is sitting in a chair for more than an hour at a time and eating regular food instead of being fed through the "crazy straw" (tube through the nose) like other times when she was too weak to eat. So again, her progress is wonderful.

I hope you all are well.


Everything is going great. We went back to visit Aliyah soon after her surgery yesterday and she was surprisingly awake already. Last time she was out for a week. Anyway, she was nodding or shaking her head yes or no and was coherent. She is only slightly loopy from the very little bit of morphine she gets for the pain. Amazing. About 4 hours after she came to cardiac recovery after the surgery, they took the breathing tube out and she was talking very soon afterward. I went home last night to get some sleep and came back today and she was sitting up in a chair. Heart transplant patients have been known to come home 2 to 3 weeks after surgery or sometimes even a little earlier when things go really well. So far Aliyah is on track to do that. This is quite a contrast to her previous surgery recoveries. The surgery was nowhere near as long as last time (last time was a actually a double with the back to back explant and then replant), she was in better shape coming into the surgery this time than the first time, and she had less bleeding after the surgery this time. The bottom line is wonderful, Aliyah will finally be untethered from the machine and especially from her parents(most teens nightmare). On the downside, as one of her friends noted, she has lost her cool points for being a cyborg the past couple years. I have heard Aliyah voice no concerns over the loss of that distinction.

Thanks again for all your thoughts and prayers for Aliyah over these past almost 2 years.